Ouch!

I've been taking Gabapentin or 0ver a month now. Gabapentin is a medication in pill form. I take one pill, three times a day. It was working great in the beginning but now it doesn't seem to be working as well as it was. The pin point of my back pain is just above the bottom of my tail bone, and then it radiates. There has never been an injury associated with the pain so my neurologist is assuming the pain has to do with nerve damage and the way the MS is displaying itself. The pain radiates up my back and has been making the muscles in my upper back and neck sore. It is also causing a lot of pain in my hips which can stop me in my tracks.

Along with the Gabapentin, I have continued to take Tramacet (again a pill but you can take it every 4-6 hours as needed). While it's more of a side effect of the medication, it helps a bit with my fatigue. Nothing else ever has which is part of why I continue to take it. It also helps with the overall pain.

I'm still waiting to hear back from the Tysabri Coordinator about when my start date is. I was hoping it wouldn't be too close to the holidays just in case I have an adverse reaction. Hopefully all will go well and that won't happen.

Gilenya or Tysabri? That is the question.

It's been a hard last few weeks for me but I'm trying to keep my spirits up.

I seem to be having a lovely flare-up -- hot back, tingling in face, feet and fingers on and off, dizziness, flickering feeling in my eyes, heavy arms, my whole body feels heavy and blah and I just can't find the energy to do much, heaviness in ears (not sure how to explain it but it's like they need to be popped), feeling like a film is over my eyes (I'm thinking maybe it feels like I'm wearing contacts but I've never worn them before). Oh and, can't forget, EXTREMELY fatigued! The flare-up has been a slow progression and seems to keep building. The way I've been feeling, how it's coming in layers and staying longer, isn't like most flare-ups I've had in the past.

I went to my neurologist a week and a half ago hoping, gasp!, for some IV steroids. I've never felt like the steroids have done much good for me (though my mom seems to think otherwise and she can probably judge me better than I can from the outside), and I haven't had steroids since 2005 when I had optic neuritis, but I was starting to feel a little desperate. My doctor didn't think steroids would do much for me at this point and started me on Gabapentin (for the constant lower back pain I've been having that you can read about here), told me to start taking 4000IU of Vitamin D and sent me for a MRI and, because the injectables haven't been good to me the times I tried them, he suggested I do some research on Tysabri and Gilenya (Fingolimod). He didn't want to voice too much opinion yet on either as both can have intense side effects including, gasp again!, death. The joys of having MS....ugh!

So, that's where I am now. I've been reading as much as I can on both but I'm finding there's not much information about people in Canada who have been on either. I keep going back and forth as to which one to try first. One day it's Tysabri. The next day it's Gilenya. Gilenya has only been out for a short while (Sept 2010), and I think even a shorter while in Canada, so there's not much long term (past a year even) information about it except for those who were in the trial studies. I've recently heard something about skin cancer with patients who have been on Gilenya but I need to do more research on that. Tysabri seems to be more well known in the US and other parts of the world but I haven't heard much about it here in Canada. It was pulled off the market for a while due to a few deaths caused by PML, also known as Progressive Multifocal Leukoencephalopathy (a rare brain infection), but it came back on the market a few years ago. Needless to say, it's a tough, tough, TOUGH decision!

I have a few questions for anyone who has read this far and wants to comment -- have you been on Tysabri and/or Gilenya? Are there any moms out there or people between the ages of 30-40 years old who are on either of these medications? What are your thoughts? How did you feel the first, second and third month after starting the medication? Do you notice any positive changes and, if so, how long until you felt these changes? I have lots of questions on both so feel free to give me as much info as you like, or you can email me at keeponsmyelin@gmail.com.

Hope everyone has a wonderful Wednesday!